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Paolo Zamboni is finally relaxing in a chair in his hotel room in Bologna, Italy, reflecting on the long day of rigorous research presentations, all part of this week’s inaugural annual meeting of the International Society for Neurovascular Disease (ISNVD), of which he is the president and mobilizing force. The gathering of the new interdisciplinary group of scientists—among them vascular surgeons, interventional radiologists, physicists and a few neurologists—represents a fresh focus on the overlooked role of the vascular system in neurological conditions. It’s a timely endeavour, given the aging population. “I think we let in a little new light,” the thoughtful and mild-mannered Italian doctor says gently.

Much of that wattage, predictably, falls on chronic cerebrospinal venous insufficiency (CCSVI), a condition Zamboni identified that is characterized by blockages in the neck and chest veins. It was in this Italian city, in October 2009, that the former vascular surgeon first publicly presented his research linking CCSVI with multiple sclerosis patients. That, in itself, wasn’t groundbreaking: vascular theories of MS predate its classification as an autoimmune disorder. What made headlines, and inspired rare hope among MS patients, was Zamboni’s claim that angioplasty to restore blood flow resulted in symptoms abating, sometimes dramatically.

Eighteen months later, CCSVI is a hot, and incendiary, topic. The medical establishment has shown resistance and skepticism; many neurologists dismiss Zamboni’s hypothesis as spurious and unproven. But that hasn’t prevented an estimated 10,000 MS patients from seeking treatment at clinics springing up internationally to meet demand.

Meanwhile, as evident in Bologna this week, a CCSVI community has formed, manifesting all of the tribal habits of any new society. A pecking order is unfolding, a language defined. Establishing consistent standards for CCSVI scanning and diagnosis was the first matter of business on day one, as the 40 founding members reached a consensus on protocols. “There was a lot of testosterone in the room,” one woman present observed. Over the next two days, an audience of more than 300 listened to 39 research submissions with such titles as, “Hyperfusion of brain parenchyma in CCSVI” and “Risk factors in vascular dementia.” Much talk and debate ensued over the minutiae of imaging methodology and clinical protocols.

And new territory was forged. Zamboni says he was buoyed by repeated findings that identified CCSVI in more than 90 per cent of MS patients. San Diego neurologist David Hubbard announced preliminary findings that quantified positive post-CCSVI treatment results, the first clinical proof they aren’t merely a “placebo effect.” Albany, N.Y., vascular surgeon Manish Mehta revealed the first double-blind CCSVI treatment study of 150 patients showing marked improvements across measures ranging from mobility to quality of life. Physicist Mark Haacke, regarded here as the Picasso of state-of-the-art imaging, weighed in with blood-flow measurement analysis that provides clues to why some people benefit more from CCSVI treatment than others.

The meeting was all about blood flow, both literally and conceptually. Buffalo, N.Y., neurologist Robert Zivadinov observed CCSVI is not unique to MS, a concept echoed by other scientists studying vascular formation in neurodegenerative diseases—Parkinson’s, Alzheimer’s and ALS. Imaging revealed similarities in MS and Parkinson’s lesions, The overall effect was Rashomon-like, as findings informed and contradicted one another. “I feel like a kid in a candy store; there have been so many disclosures,” Mehta said.

Zamboni views the ISNVD as “a genuine academic and cultural movement determined by people and by results.” Board members pay their own way, he says; there are few sponsors and none of the high-roller extravagance seen at many medical meetings.

That may be, but booths set up outside the presentation hall reflect the emerging CCSVI industry. One of the meeting’s sponsors, medical imaging conglomerate Esaote International, is selling the $73,000 Echo Doppler, billed “the only product designed for the diagnosis of CCSVI.” Another for Bard Peripheral Vascular displays the latest in angioplasty balloons.

The fact that there’s potentially big money to be made here, ironically, only reinforces the need for the kind of dialogue and debate evident in this medieval Italian town this week: we may now be in the 21st century, but mysteries of the human body still remain to be revealed.

Thanks to you, Anne Kingston, for making the trip to Bologna, to attend the conference. I wish the politicians, MS Society reps, and few angry neurologists who are preventing treatment in Canada, would have made the effort to attend. Nice job on the story. You have captured many subtle nuiances that help to paint a clear picture of the situation. You have a large audience, and I'm hopeful you've opened the eyes of many.
Amy Preston (Canadian- CCSVI positive, and treated on Oct. 18, 2010 in the U.S.A.)

Hi Amy,
If you have the chance read "This is what it must feel like to witness medical history in the making" by Anne Kingston on Tuesday, March 22, 2011. Caution: like me you may get pee-off at the Medical Industry of MS. "Drug therapies, a $10 billion industry primed to grow to $15 billion by 2015, modify and reduce symptoms for some patients but come with exorbitant price tags and a host of side effects that can include death."
“Indeed, a few people in a position to influence policy were there: Julian Spears, co-director of the neurovascular program at Toronto's St. Michael's Hospital, who will sit on the Ontario after-care committee; the MS Society of Canada sent Karen Lee, assistant vice-president of research and programs. What they took away from the conference is unknown, at least publicly. Both declined to be interviewed by Maclean's.”
I wonder why….

Thank you Ms. Kingston for this very informative article. Hopefully, your story will help those of us with MS finally achieve the opportunity to receive the necessary treatment and care in our own country.

Bravo to all. Those who fought…won, those who believe and are doing something about it through research and most importantly those who are staying apart from the large drug companies that appear to want to slam this whole thing.

In Canada, I said it before, REMEMBER TO USE YOUR VOTING POWER . Elections are on the horizon.

The tide is changing, and it will hopefully drown all of the nay-sayers. I was sceptical of this at first, but the more I read about CCSVI the more sense it made….as I read more symptoms of conditions that interfere with return blood flow from the central nervous system (Superior Vena Cava Syndrome, usually resulting from a tumor in the chest) I had my final 'Eureka' moment, because I have ALL of those symptoms. I only hope the airhead politicians who are blocking us from having this treatment in Canada will finally take off the blinders before it's too late for others….I don't want to end up like Bill Peart!

There is nothing mysterious about venous drainage of the head. Any significant blockage of veins draining the head would cause facial edema and raise intracranial pressure resulting in protruding eyeballs, none of which are present in MS patients. One can have total blockage of both internal jugular veins with no consequence because of extensive collateral veins draining the head. See blog for details,http://bit.ly/aPiD4U

Face it Colin, you're the black knight… no arms, no legs, yelling "Come back here you yellow bstds! I'll bite your legs off!" – you've already lost the battle to stop the CCSVI in MS theory from receiving serious consideration… we now have an International Society for Neurovascular Disease – a non-profit professional association devoted to furthering the development of research for neurovascular related diseases including CCSVI… "who are discussing the science".

The vascular association to MS and other diseases is receiving and will continue to receive serious consideration and there's nothing you can do about it.

The ISND might be "non-profit" but its members are becoming millionaires many times over by scamming desperate patients. It is in their interest to keep the Zamboni myth going as long as possible so that they can retire early to castles on Mediterranean.

I think I can take some credit that no scans for "CCSVI" and no "liberation" treatments are done in Canada and likely never will be.

colros on March 22, 2011 at 12:54 pm

Oh Colin…yes its all about you and the extraordonary spare time you must have to show up in every media comment piece on CCSVI…you're like the anti super-hero

wheelie on March 22, 2011 at 1:06 pm

Your concern for how I spend my time is endearing but why don't you want to discuss the scientific evidence or lack of it for "CCSVI?"

colros on March 22, 2011 at 1:56 pm

I dont need to …I've researched it for 18 mo, read all the studies-not just stats that support me,watched the developments, talked tp pts…Obviously I made up my mind…and there is nothing I can say, nor would I want to say about CCSVI to you…its like talking to a brick wall….one big yawn.

wheelie on March 22, 2011 at 2:11 pm

Your knowledge of the scientific method is deficient. Can you give me the reference to just one well-blinded, randomized, controlled trial proving that "liberation" has any effect on MS symptoms or disease progression? If not, there is no reason to have "liberation." That might be terribly boring compared to Zamboni's "liberation" evangelism but that's science.

colros on March 22, 2011 at 2:40 pm

Sure when you give me one well-blinded randomized study that says removing tonsils improve the quality of life. You know very well there hasn't been one…and what idiot MSer who wants the procedure is going to allow a sham study…besides you are awake for the procedure and you know when balloons are inflated.. My knowledge of scientific methodology is not deficient, , just not applicable to long term while real pts are actually dying.

Funny you talk about 'evangelism'..thats the one thing my neuro noticed especially…that he was a sane, reasonable man…unlike some Canadian neuros he'd heard lol

wheelie on March 22, 2011 at 3:00 pm

I am now tired of playing this game Colin…ttfn

wheelie on March 22, 2011 at 3:02 pm

This is a game? We are talking about a surgical procedure that to date has transferred at least $one billion from the bank accounts of desperate patients to those of unscrupulous charlatans and will transfer $billions more unless it is stopped.

It is quite easy and ethical to do a sham operated controlled study of "liberation". Just do it under general anesthesia so the patient doesn't know what happened. Until such a study is done no "liberation" should be done outside of such a trial.

colros on March 22, 2011 at 10:23 pm

You are a doctor and yet you suggest… "It is quite easy … Just do it under general anesthesia."..as a safe and ethical option? http://www.mayoclinic.com/health/anesthesia/MY001…
Risks
By Mayo Clinic staff
Most healthy people don't have any problems with general anesthesia. However, as with most medical procedures, there is a small risk of long-term complications and, rarely, death. Specific complications are related to the type of procedure and your general physical health.
The following complications are rare and occur more frequently in older adults or in people who have medical problems:
■Temporary mental confusion
■Lung infections
■Stroke
■Heart attack
■Death
Would this sham also include a sham femoral vein incision and it's associated risks? You trial proposal sounds more risky than venoplasty.
Dr Rose.. your 15 minutes is all but done.

Are you deliberately spreading misinformation or are you simply delusional?

Monty Python on March 23, 2011 at 5:36 am

OOps, early in the morning…

$1 billion / 10 thousand procedures = $100 thousand per procedure.

But again, Really? $100 thousand per procedure???????

Monty Python on March 23, 2011 at 5:39 am

Colin,what makes you think you deserve credit for the lack of CCSVI scanning / treatment in Canada? You're deluding yourself if you believe you wield any influence whatsoever.

Monty Python on March 22, 2011 at 1:54 pm

So Colin, you believe that decades of drug research has dealt with the issue of MS? It doesn’t look like it does it? At least the Liberation has shown a ray of hope for sufferers, unlike the profiteering pharmas. Who’s payroll are you on?

It's simple science, at the sesame street level. If 300 ml of blood enter the head then 300 ml of blood must exit the head in a timely matter.

"Any significant blockage of veins draining the head would cause facial edema and raise intracranial pressure resulting in protruding eyeballs, none of which are present in MS patients." Key word you are using is "blockage" meaning no out flow what so ever. This is more like a sink with a slow drain, there will be times when the blood can drain and there will be times when it backs up.

No more money should be spent on these stupid drugs, if you believe that the new pill costing $4,000 ($133 each) that is 52% more effective than the previous CRAB drugs (33% effective) you are a direct consumer of junk science. By stating that this new pills is 52% more effective biogen has basically shown how ineffective the previous drugs were, which by the sound of your opinion you supported, wrongly.

Right, it's simple cardiovascular science. Cerebral blood flow is normal except in patients with ischemic strokes or brain atrophy from various causes but not in MS patients unless they have atrophy. There isn't a single reliable study showing that reduced cerebral blood flow is a primary cause of MS.

All drugs for MS on the market have been shown to have an acceptable risk/benefit ratio in randomized, controlled trials. "Liberation" has never been proven so in any such trial.

Colin, there are now 102 cases of Tysabri induced PML and 21 deaths as a result. You call that acceptable? And since you are so concerned MS patients are being exploited for financial gain, you might want to look at Biogen Idec's income statement for FY 2010…http://ca.finance.yahoo.com/q/is?s=BIIB&annua…

How many "castles on the Mediterranean" does on billion dollars in net income by you?

"Liberation" charlatans, like Marian Simka in Katowice, Poland, are netting at least $500,000 per week, orders of magnitude more than the CEO of any drug company.

colros on March 22, 2011 at 2:25 pm

Colin, if you can provide me with "Doctor" Marian Simka's financial statements, I would love to take a look at them. However throwing out a figure of $500k per week means nothing to me… is this revenue for the clinic? How many procedures does this represent? What's the gross margin on a procedure? What other expenses are involved… facilities, equipment, staff, etc? – "netting" means nothing to me!

Throwing out sexy phrases like "life savings", "desperate MS patients", "liberation charlatans" is just that… throwing out sexy phrases – it's garbage designed to support an unsupportable argument!

I can tell you Biogen Idec's revenue was $4.3 billion in FY2010. I can tell you their gross margin on revenue was ~92% I can tell you their net income was ~$1 billion – these are facts supported by Biogen Idec's financial statements!

Monty Python on March 22, 2011 at 2:59 pm

I have repeatedly stated my estimate of Simka's income on many blogs. He must have seen it but has never denied that he makes at least that much.

Colin Rose on March 22, 2011 at 3:40 pm

and if the guy makes a trillion by alleviating the suffering of MS patients then he still isn't getting paid enough

whitey228 on March 22, 2011 at 10:47 pm

Colin, Have you considered the possibility your delusional beliefs are of no importance to him?

Month Python on March 23, 2011 at 5:59 am

All drugs for MS on the market have been shown to have an acceptable risk/benefit ratio in randomized, controlled trials. "Liberation" has never been proven so in any such trial" Yes indeed, liver failure, kidney failure, birth defects (my friend on rebif had to abort her baby due to several birth defects), miserable flu like side effects every week. The risk/benefit is easy to push if you aren't taking the risk. If these drugs were so effective then there wouldn't be any need to develop more. Where are the youtube video proclaiming how well the drug therapies. I have to wonder for someone who is supposed to be a cardiologist how it is you can have so much "information" about trials and thrombosis .. please support your disinformation with some links and references to PUBLISHED trials, you seem to have a lot of in direct references. You really aren't very credible with your information. Do you understand fluid dynamics?

I took the time to look through your blog.. I can't believe you are a doctor. The math in this is simple.. the blood that enters the brain must leave it at the same rate other wise it will cause a deficiency at another location. You must by now realize that the circulatory system is a closed system. Can you explain my numb BLUE feet? How about my numb left hand, it kinda feels like I had been laying on it watching TV except it won't "Wake up". Poor blood flow explains both depression and fatigue in MS patients. Your mind if focused on the idea of a COMPLETE blockage not reduced outflow. I don't drink, I don't smoke, my diet is normal I am 5'8 and 185 lb but my BP is 130/110 regularly and often spikes to 160/140. I am willing to bet when I go get this procedure done for $2,000 in Albany NY (no stents) that my BP returns to normal. You are writing yourself into the wrong side of the medical history book. In a world of buyer beware, tell me where all the unhappy CCSVI customers are?

Cerebral blood flow is normal in MS patients except in the advanced stage when there is brain atrophy.

Please explain how reduced total cerebral blood, if it existed, would cause localized blue feet and hand numbness.

Any reduction in cerebral blood flow would first affect the rapidly metabolizing neurones of the grey matter and cause unconsciousness long before it affected the slowly metabolizing myelin-producing cells of the white matter disease of which causes MS.

Cerebral blood flow has nothing to do with BP. Long-term average BP is controlled by the kidney.

Well…thank you Anne Kingston. And thank you to my neurologist who SUPPORTS this treatment…no its not the cause or the cure, but he thinks its a viable component after talking with Dr Zamboni. So off I go to the UsA, with his blessing…I truly wish I could stay in Canada.

Why would your neurologist support "liberation"? There is zero scientific evidence of any benefit. Most likely he doesn't want to alienate patients who believe in Zamboni's "CCSVI" cult and takes no personal risk by giving it his blessing. But it is highly unethical for any doctor to recommend a treatment that has not been proven to have an acceptable risk/benefit ratio in randomized, controlled trials.

There was a feature on the news recently about an American vascular specialist who is doing a study including some Canadian participants. He became passionate about learning more about MS and a possible link with sluggish blood return from the brain as his 20 year old son suffers from MS. He did angioplasty on his son and found no only that his sons symptoms greatly improved by that the venous blood flow out of the brain sped up markedly. He invited other patients with MS (at his cost) to his private clinic and began a preliminary study. Colin Rose, what you relate about increased intercranial pressure is true. However, those symptoms would not exist if the flow of venous blood was only sluggish and the obstruction, partial. You must remember that knowledge is every evolving. I am always brought back to the physician who discovered that a bacteria is responsible for stomach ulcers. He too was maligned and his theory refuted by the medical community. Now it is accepted internationally.

Why don't you google "Dr Hubbard KOMO NEWS" and watch his 30 min interview explaining the science. You can also find him on youtube speaking on the hemodymanics. If you have any background you can look into Campath, a leukaemia drug that has had a 75% success rate with halting MS attacks. What yo umay find interesting if you bother to open your tiny mind is how campath functions and how leukaemia functions and THEN, if you have any scientific mind you'll have a very good grasp of why CCSVI is reliant

Ha ha Colin..yes he doesn't waant to alienate me cause I'm a zealot-not He dismissed it at first, but he;s had meetings with Zamboni and believes he has a valid treatment option for symptomology. He-the neuro-will be in touch with the IVR, and is interest in collaberating. BTW this is the most ethical dr I know-and very conservative.

Your neuro is collaborating with Zamboni and the IVR "liberation" charlatan who is making $millions by scamming desperate people, like you with an unproven treatment? That's not very ethical or conservative. Are you sure he isn't getting some payment for "collaboration"?

This is just one more tactic Colin… If you can starve the CCSVI community of finances, you can undermine their research efforts – I get it.

Call them names, make false accusations, it doesn't matter my black knight friend, you have already lost the battle… we have a growing community genuinely seeking to comprehend the vascular association to MS, a community willing to consider any and all paradigms, and not just those aligned with pharmaceutical business models. Who knows, maybe, just maybe, they may take us one step closer to finding, dare I even use the word, a cure. God bless them, keep them safe from bigots, and God's speed to them.

As Zamboni treated his wife with an unproven surgical procedure so did Hubbard recommend the same for his son. Both should be delicensed for highly unethical behaviour. Doctors shouldn't be involved with the diagnosis and treatment of relatives or loved ones. Their professional judgement can be impaired as Hubbard's diatribe clearly shows.

Hubbard presents a collection of disjointed hypotheses in an attempt to justify his egregious behaviour but no randomized, controlled, well-blinded trial proving the "liberation" has any effect on MS symptoms or disease progression. That is the only data that is worth considering and he should have waited for that data before recommending "liberation" for his son.

Does anyone know if any of the investigators who are heading the 7 MSS and NMSS studies on MS and CCSVI were in attendance at the ISNVD conference, namely, Dr. Brenda Banwell, Dr. Fiona Costello, Dr. Aaron Field, Dr. Robert Fox, Dr. Carlos Torres, Dr. Anthony Traboulsee, and Dr. Jerry Wolinsky? After all, they are “experts in the field” so I thought their names would show up in the ISNVD brochure somewhere…??

The ISNVD conference was not about science but a pep rally for the interventional charlatans who are making $millions from the Zamboni myth. Those neurologists doing legitimate, peer-reviewed research into the existence of lack of it for "CCSVI" would not have been welcomed and would have been ignored if they had gone.

Holy crap Colin do you have nothing to do in your spare time or do you have nothing but spare time? This guy used to log on the CCSVI Locator "claiming" to be a physician and arguing with people left and right. He eventually got booted and I assume that he scours the internet for any forum to spread his "expertise". Colin you claim to be a physician so with your available funds, surely you could have attended the meeting in Bologna, Italy to spread your propaganda? Judging by your popular rating at -34p clearly you aren't reaching your target audience. Perhaps your cardiovascular expertise would be more welcomed elsewhere because no one wants to hear it hear either.

Indeed, true believers in the Zamboni cult can't bear to discuss the science or lack of it behind Zamboni's evangelism. I consider it a success when I am blocked by a "CCSVI" group. I, on the other hand, have never blocked anyone from commenting on my blog even after being told I should shoot myself.

I have no propaganda to spread. I simply ask questions about the scientific justification for "liberation". That the true believers don't want to discuss cardiovascular physiology and scientific evidence makes my point that they are placing blind faith in pseudo-scientfic truth as revealed by Zamboni and other "liberation" charlatans.

Ha ..Colin Rose actually is a cardiologist…but seriously you should see the comments at Rate Your Doctor..the words arrogant, uninterested, God-complex are repeated by various pts. So no surprises here then

Unbelievable. Literally saw my neurologist in Kingston, ON today and told him of my plans to go to NY to get liberated and he was actually in support of it, whereas just 6 months ago he was not. Perhaps the tide is changing?

"Clearly our primary and high school science courses are failing the population if they readily accept an obviously suspicious, instantaneous cure for a chronic degenerative disease and can't ask the right questions about Zamboni's hypothesis and the reason for the improvement in subjective symptoms in the YouTube videos of some of the MS patients who have been “liberated.”"

Exactly how does one present symptoms such as fatigue, memory loss, and pain, to name a few, objectively? How does one quantify it to give an objective answer such as blood pressure, blood glucose, pulse rate, etc? Although these symptoms will vary in explanation from patient to patient, no two patients will be able to give an accurate "objective" description of their symptoms because as individuals no two patients will experience the exact degree of symptoms. On a given day, one patient's pain may measure 4, while another may measure 6, yet the pain may be equal. Ironically all MS experts clearly state that these subjective symptoms are clearly a part of the disease. The question then begs that if the MS experts include these symptoms in the disease paradigm of MS and these symptoms are given subjectively to the MS experts, then how is it possible that the reverse or improvement of these symptoms associated with liberation are not equally accepted by the MS experts?

If you have the chance read "This is what it must feel like to witness medical history in the making" by Anne Kingston on Tuesday, March 22, 2011. Caution: like me you may get pee-off at the Medical Industry of MS.

"Drug therapies, a $10 billion industry primed to grow to $15 billion by 2015, modify and reduce symptoms for some patients but come with exorbitant price tags and a host of side effects that can include death."

“Indeed, a few people in a position to influence policy were there: Julian Spears, co-director of the neurovascular program at Toronto's St. Michael's Hospital, who will sit on the Ontario after-care committee; the MS Society of Canada sent Karen Lee, assistant vice-president of research and programs. What they took away from the conference is unknown, at least publicly. Both declined to be interviewed by Maclean's.”
I wonder why….

It is of great importance to emphasize empirical data before choosing to support or refute any new treatment. It is indeed exciting to imagine a procedure with the potential to improve the quality of life of so many people suffering from M.S. around the world. Unfortunately, as of the present there is very little such evidence to support this theory. Don't take my word for it. Please follow the link posted at the bottom of this post to read the research and form your own opinions. Sadly, other than material published by Dr. Zamboni himself, there is little research to support this procedure.

I expect that this theory will be fully investigated and I sincerely hope that something positive emerges.

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